Parents as Advocates for Pediatric Palliative Care.

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

Consumer participation and organizational development in health care: a systematic review.

OBJECTIVE: To provide an overview of published data on user participation in Health Care. BACKGROUND: Active and passive involvement of consumers into agendas associated with Health Care is still an exception. Data on the success of user participation projects in various areas of Health Care are lacking. DESIGN: Systematic literature review using public databases. RESULTS: We identified 467 studies including five systematic reviews describing various participation projects, among them workshops, citizens' panels, focus groups, citizens' juries, and consultation meetings. A general trend favoring a specific method was not observed. The categorization of evaluable studies according to Health Care area (n = 331) yielded the following results: general medicine/preventive medicine (n = 5), internal medicine/oncology (n = 132), obstetrics and gynecology (n = 2), surgery (n = 1), neurology/psychiatry (n = 2), social medicine (n = 16), health worker training (n = 38), and research agenda setting (n = 135). Predefined qualitative parameters were extracted from 69/467 (15%) studies. Sixty one of 69 studies (88%) were retrospective analyses without control groups and without outcome assessment. Six studies had outcome assessment, three judged the outcome as successful, two as negative, and one multi-project study reported 'very successful' project assessments in 24% of the projects. In 18 studies, the level of consumer participation was described as 'informed' in 2/18, 'advisory' in 14/18, and 'decision-making' in 2/18. The following factors associated with project success were identified: adequate financing, partnerships with well institutionalized consumer organizations, advanced project logistics, small-scale projects, and adequate internal and external communication. CONCLUSIONS: Most consumer participation projects were performed in research agenda setting, internal medicine/oncology, and health worker training. Various methods have been used in the projects, the level of consumer participation was low, and the success rate of the investigated projects was moderate. Potential factors associated with project success and future areas of research are discussed.

[Associative commitment and cancer. Results of a sociological study]. / Engagement associatif et cancer. Résultats d'une enquête sociologique.

The associative anti-AIDS movement was the subject of many sociological research interesting in the various positioning of associations the ones compared to the others or in the strategies from the involved actors. The struggle against cancer, which however occurs during the interwar period, did not give place to such developments. Thus, although the report of the absence, in France, of a collective and militant mobilization of cancer patients was already established, the forms of the cancer patients involvement were not questioned. How do the cancer patients to get involved within the associative anticancer movement? We will try to answer this question by the analysis of two distinct dimensions from the involvement: the type of association's organization and the type of patients' commitment the in the associative anticancer movement.

The creation of industry front groups: the tobacco industry and "get government off our back".

We investigated how industries use front groups to combat public health measures by analyzing tobacco industry documents, contemporaneous media reports, journal articles, and press releases regarding "Get Government Off Our Back," a coalition created by the tobacco industry. RJ Reynolds created Get Government Off Our Back in 1994 to fight federal regulation of tobacco. By keeping its involvement secret, RJ Reynolds was able to draw public and legislative support and to avoid the tobacco industry reputation for misrepresenting evidence. The tobacco industry is not unique in its creation of such groups. Research on organizational background and funding could identify other industry front groups. Those who seek to establish measures to protect public health should be prepared to counter the argument that government should not regulate private behavior.

The adoption of innovation in collective action organizations.

This study used a quantitative/qualitative methodology to explore how collective action organizations (CAOs) remain open to organizational change and innovation. It examined the adoption of inclusion--a recent innovation in the field of disabilities--by local chapters of The Arc Michigan (a disabilities CAO). We found considerable variability in the adoption of inclusion by local Arc chapters. This variability was significantly related to the ecology surrounding these chapters. Local Arc chapters that had adopted an inclusion philosophy had significantly different internal and external environments from those that had not adopted inclusion. Our qualitative findings make it clear, however, that innovative Arc chapters were not the passive recipients of these internal and external influences. These chapters were proactive players in defining and shaping the nature of their internal and external environments. Strategies that were related to a chapter's ability to remain open to innovation included (a) a change orientation, (b) a conscious philosophy or vision, (c) a proactive strategy for achieving chapter goals and overcoming barriers to change, (d) the creation of a supportive organizational network, and (e) avoidance of resource dependencies that required them to engage in activities that were inconsistent with the innovation. These findings provide a framework by which CAOs can maintain an openness to innovation and remain on the forefront of social change.

[Can we still guarantee the quality of care?]. / Peut-on encore garantir la qualité des soins?

Quality of care in the patients view is different from that of health care providers. It must be taken into account as well. The Swiss Patient Organisation has twenty years of experience in this field. Three aspects of quality of care are specifically presented: health care providers competence, patient information and the constructive use of medical errors happening in hospitals. The organisation has stated that the will for improving quality is widely spread among health care providers. However, quality improvement has a price that will have to be faced to put in to action and meet this new challenge in medicine.

A tale of two (low prevalence) cities: social movement organisations and the local policy response to HIV/AIDS.

In the field of HIV/AIDS, social movement organisations (SMOs) have been identified as powerful potential catalysts for change through their impact on formal organisational structures and the policy process. In addition, they have the capacity to be important providers of services in their own right, through the community resources they are capable of mobilising. In the United Kingdom, however, their role in policy formation is disputed. Previous studies have concluded that they have been most influential at national policy and ward level. At the level of local policy making, their influence has been found to be patchy and confined largely to securing recognition of HIV as an issue. Most previous research has, however, been conducted in high prevalence, metropolitan settings with functional SMOs. This paper presents the results of a comparative case study of two neighbouring provincial low prevalence district health authorities (HAs) in England. We describe the changing national policy context from 1986 to 1995 and use a strategic change model to analyse the local development of care and treatment services for people with HIV/AIDS, in particular the relationship between SMOs and HAs. Despite being demographically, socioeconomically and epidemiologically similar, and sharing an identical national policy framework, the two districts demonstrate completely divergent organisational responses to the HIV/AIDS epidemic. We conclude that the level of prior social movement mobilisation and the degree of receptivity for change within the HA are the key variables for explaining variations in the scale of strategic change observed in the two districts.

Persons with cancer speak out: reflections on an important trend in Canadian health care.

In this paper I have described some of the recent developments in the growth of a patient/survivor movement in Canada. Arguments for the value of increased patient participation include providing a needed balance to the traditional medical perspective, addressing patient needs free from other vested interests, providing insights available only to cancer survivors, and facilitating empowerment. A number of current and potential difficulties related to increasing cancer survivor involvement have been raised, ranging from deliberate opposition from health administrators to disapproval from professionals of survivors' emotional expression to patient unwillingness. The greatest challenge is to move beyond token patient representation to substantive participation.

Emerging forces in cancer care.

The mainstream of scientific research is moving towards increasing recognition of the limits of conventional therapies and cautious optimism about the potential for new biological therapies. This situation has given rise to a social phenomenon among cancer patients. Today, in many parts of the world, a significant minority has chosen to engage actively in the fight for recovery. This minority searches for an intelligent integration of efficacious conventional therapies and complementary therapies involving personal trials of intensive health promotion. These trials cover nutritional, psychological, and immuno-modulating approaches to supporting general health. It appears that 10% among those patients achieve exceptional results, another 10% fail, and 80% become "healthy" cancer patients. While these experiences raise many interesting clinical, scientific and policy questions, they have provided a growing body of evidence that a great deal can be done with behavioural approaches, not in terms of sweeping cures but possibly for some gains in life extension and certainly for great gains in the human experience of being healed (or "becoming whole" with cancer).